TYAResearch:
Biobanking
FAQs Biobanking
All the questions below were developed focus group discussions with our TYA group.
What’s biobanking?
The best research into cancer is carried out on samples from patients with cancer so that the scientists and doctors can find out what happens when a patient has cancer and what can be done to help treat that cancer.
By donating your samples to a biobank, these can be kept in the best possible condition ready to be used in research.
VIVO Biobank collects samples from children and young people who have cancer, stores them, and gives them to researchers who are working to improve the treatment of cancer in children and young adults.
Most samples are kept at very low temperatures (much lower that a normal freezer) and will keep for many years.
We have some samples that are over 15 years old and are still useful. Some samples of solid tumour are preserved in a type of wax and these last for over 20 years.
The samples and data sent to researchers is free to them.
We ask them to pay for the transport of samples but that is all. If a commercial company requests samples, they will be charged the costs we have incurred in collecting, processing, and storing the samples but we will not sell your samples.
A biobank is important in the long-term collection and storage of samples for research.
Biobanking is the collection and safe storage of samples from patients along with some data on the samples.
This allows the very best research to be done to understand disease and learn how to treat it.
You may not benefit directly from biobanking, but many of the treatments that are used have been developed using samples that have been donated in the past.
We work with research nurses and clinicians at the clinics who ask for consent from patients.
Samples from the patients who have consented are then sent to VIVO biobank for processing and storage.
Researchers can apply to VIVO Biobank to get samples to carry out research into cancer in Children and Young Adults. Research must be shown to be a good use of samples.
The aim of VIVO Biobank is to provide a national collection of samples from Children and Young Adults with cancer that is stored safely and can be used by scientists carrying out research into cancer in children and young adults.
Scientists and doctors use biobanks to get samples for their research.
VIVO Biobank collects information from your medical records including your sex, your age at diagnosis, your cancer diagnosis, your treatment, and details about your genetics.
The Biobank keeps this information very secure, and scientists cannot find out your name or personal details.
To access VIVO Biobank data, a researcher needs to submit a description of what data they need and exactly what they want it for.
This is sent to an expert panel who will consider if it is a good use of data. Data is only released anonymously, and no-one will be able to link you to any data that is released. Nothing that can identify you will be released.
Biobanking is the best way to collect and store samples from a lot of patients.
This helps with collecting samples from patients with very rare cancers and also means that we can find out why some patients respond to treatment better than others.
What’s involved?
Nothing.
Your doctor or nurse will ask for your permission to collect the samples, all you need to do is sign the consent form.
All the samples we collect are taken when you are having samples taken anyway as part of your treatment.
In some cases, you will be asked for a little bit extra (a teaspoon of blood) and in others you will be asked to donate what is left over.
We collect blood, bone marrow (from people with leukaemia or bone cancer), spinal fluid (if a sample is being taken anyway) and small pieces of tumour. You will never need an extra procedure.
We would be delighted if you want to volunteer to Biobank. Just speak to your nurse or doctor.
You will not be paid to biobank.
Your donation is seen as a generous gift to help in the fight against cancer in children and young people.
Other bits you might like to know.
Biobanks for human samples follow the recommendations set down by the Health Research Authority and the Human Tissue Act.
Sample collection, processing, and storage.
We also collect information about the patient such as their age at diagnosis, their disease and their treatment.
Biobanks are either disease specific or non-disease specific.
For instance, VIVO Biobank is a biobank for cancers affecting children and young people while the UK biobank is a biobank for all types of diseases.
Not entirely but we work very closely with the NHS.
The NHS has specified that all children and young people with cancer are offered biobanking, and we have been helping different NHS Trusts to achieve this specification.
Yes, biobanks in the UK are ethical. Biobanks need to be approved by the Health Research Authority before they can collect and store samples.
Biobanks must meet the standards set out by the government organization the Health Research Authority. Samples must be handled according to the Human Tissue Act.
All ethically approved biobanks in the UK are required to register on the UK Tissue Directory and there are over a hundred biobanks registered on this directory.
The samples in VIVO Biobank are looked after very carefully with a lot of safeguards.
The samples are all stored at low temperature and the freezers all have temperature alarms on and there are always back up freezers available. We are very careful with your precious samples.
VIVO biobank is a national biobank funded by Cancer Research UK and Blood Cancer UK.
VIVO Biobank is run by a Steering Committee who are responsible for looking after the samples.
